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Interview 03

Age at interview: 41
Brief Outline: Woman with haemoglobin SC disorder. Husband discovered he was a sickle cell carrier. Had CVS in all three pregnancies. The first and second babies had SC disorder, but the third had sickle cell anaemia. Video and audio clips read by an actor.
Background: Married, three children. Ethnic background/nationality' Black African.

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This mother was diagnosed with a sickle cell disorder in childhood in Nigeria, and grew up believing she would not live past the age of 20. When she came to the UK to study, she discovered she had haemoglobin SC disorder, which is usually less severe than sickle cell anaemia (or 'SS'). She has had problems with severe pain at various periods of her life, but has learnt how to manage her condition well.

Her partner believed he was not a carrier, but when he went for screening during her first pregnancy he learnt he was a sickle cell carrier. This meant their children had a 50% chance of being carrier, a 25% chance of having SC disorder and a 25% chance of having sickle cell anaemia. They decided to have a diagnostic test (CVS) in each pregnancy to help them prepare, and she felt that if she discovered any of her babies had sickle cell anaemia she might terminate the pregnancy. The first and second babies were diagnosed with SC disorder, but the third had sickle cell anaemia. After talking it through with her husband, her sickle cell counsellors and a confidential telephone advice line at her church, she decided to continue the third pregnancy. So far her third child's health has been good, and she is glad she has had prenatal diagnosis in each pregnancy.

 

She wanted to avoid marrying a carrier, but did not realise that carriers are fit and healthy, so...

She wanted to avoid marrying a carrier, but did not realise that carriers are fit and healthy, so...

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What did you do about testing before marriage? Did you find out if your partner was a carrier?

Yeah, it's quite interesting because I used to have in my head, “Oh well, I wouldn't want to marry someone who is a carrier”, basically, because I know this sort of thing. So when I met my partner, you know, I told him about myself, because I mean he has to know that I've got SC disorder [haemoglobin SC disorder]. And I remember that when I met him (who's my husband) I said, “Oh well, he's never been sick before. He can never have it. It's sure he hasn't got any traits, you know. He's never been, he's always very healthy, you know. He hasn't got any trait, you know.” 

And at that time I just didn't really sort of think in my head that, “Oh no, he has to go and get tested, basically just straight away,” you know. And so when I got pregnant that's the time that we just thought, “Okay, let him get tested.” He didn't get tested before, before I got pregnant. So when I got pregnant with my first daughter, he got tested and when they told him that he was [AS] sickle cell carrier, you know, he couldn't really believe that. “No, it just couldn't be that is right”, you know. But then they did the test again, and they said, “Yeah, it's AS [sickle cell carrier].” …I suppose he didn't really know much about, you know, being a carrier, because I don't know much about being a carrier. I know something, I know about living with sickle cell, but not a carrier. 

Footnote' often people do not realise that being a carrier does not affect your general health and you may have no idea you are a carrier unless you are tested. Haemoglobin SC disorder is a type of sickle cell disorder in which the child has inherited hameoglobin S (sickle cell) from one parent and haemoglobin C from the other. Whilst it is a type of sickle cell disorder, it is a distinct condition. The symptoms can be similar to sickle cell anaemia, but SC disorder is often (but not always) milder in its effects than sickle cell anaemia. 

The word 'trait' is sometimes used to describe carrier status.

 

Choice is really important. Screening and diagnosis help you make choices, whatever your opinions...

Choice is really important. Screening and diagnosis help you make choices, whatever your opinions...

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It's good for you to still have the screening, just to be able to be informed. I mean, at the end of the day it's still people's choice whether they want to or not, but to me I would have said it's good to know. To me it was good for me to know, anyway. Even though I decided to go ahead anyway, it was good for me to get myself prepared to start thinking about, “Okay, what does the future hold?” you know. 

And if people have choices what to do- I'm a stickler for choices. I'm for choices. I would have said that I would encourage people to have this screening just to be able to - especially if you've got sickle cell - just to be able to be prepared with what will come. And maybe make a decision. I mean, my decision was that I didn't want to go ahead with a termination. But if someone said they wanted to go ahead with it, if I knew someone who said they wanted to go ahead with it, I will tell them my experience, but I wouldn't say, “Stop.” I wouldn't say, “Oh well, that's the wrong thing to do.” Because at the end of the day, it's the way you feel, not what someone will tell you. It's the way you feel and maybe you talk it through with your partner, your husband.

 

The risk of miscarriage from CVS was less important than finding out whether her baby had sickle...

The risk of miscarriage from CVS was less important than finding out whether her baby had sickle...

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I remember that they told me that there is a risk of miscarriage, you know, and that's one of the risks. And so I need to sort of decide whether I need to go through with it or not. But at that time it was more important for me to know whether she's got the condition than the risk. I wasn't too scared about the risk at that time. It was more important to me to know that, “Okay, now that I know my husband is AS, is a sickle cell carrier, I mean, I need to know. I need to know so that I will be able to” - I mean, my idea was like, “Oh, I just wouldn't want to bring a child who comes into this world suffering”, basically and I just needed to know then. 

So although it was explained to me that there was a risk of miscarriage and everything, the thing is that I always hope for the best, basically. [laughs] You know, I always hope for the best. Because although they would tell me a risk, like I tell you, when they told me that, “Oh, this is your one in four chances of having this thing”, I was hoping that she'd have AS [sickle cell carrier] or AC [carrier of haemoglobin C]. So when they say a risk, “The risk of miscarriage is this”, I just hope that, “Well, I wouldn't be that risk.” [Laughs].

Footnote' This woman has SC disorder and her husband is a sickle cell carrier. She therefore had a 1 in 2 risk that her baby would be a carrier (either of sickle cell or haemoglobin C), and a 1 in 2 risk that the baby would have a sickle cell disorder (either SC disorder or sickle cell anaemia).

 

She was given a clear explanation of what CVS would involve, and did not find it too painful. ...

She was given a clear explanation of what CVS would involve, and did not find it too painful. ...

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Before I had the test done again I was given information again about what it's going to be like. The test is called CVS, chorionic villi sampling, and what I should expect - they said they were going to do it through the abdomen, because I think they can do it through the cervix and abdomen, but they were going to do it through the abdomen for me, you know… I mean, they gave me the choice. It was my choice. It wasn't that they told me that I have to do it. It was my choice that I wanted to really do it, you know. So they asked my permission. I wanted to do it. I had to sign a consent form. And then they give me a date to come and do it, you know. 

And then I went the next time to have it done… It was done definitely before twelve weeks, because they said that they can do that one earlier. I mean, in a way it's good to have it done then, because if you decide that you want to terminate the pregnancy, it's much better that way than if you should be advanced. Because there are other tests which they can do when you're advanced, you know. But it's better to do it at that time. 

And because they asked me what did I want to do then. And I said, “Well, if it's a child with sickle cell anaemia, I've always said if it's an SS [sickle cell anaemia] child I think I'll consider a termination.” And so they had it done before twelve weeks. I went to the hospital and they actually they numbed the area of the abdomen. And they have this very long needle, you know? And it went through. It wasn't very painful, I just had like a sort of like a pain or something going through, you know - not very, very painful. It's just a very slight thing going through, you know. And then they had to suck off something, just a tiny thing. So they went through and sucked this thing and some fluid went up this needle, like a reddish fluid into this needle… It didn't take very long to have it done.

 

She was shocked to be told that the CVS showed her third baby had sickle cell anaemia. She had...

She was shocked to be told that the CVS showed her third baby had sickle cell anaemia. She had...

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So I had it done, and they said they were going to let me know about the results. So I mean I was very anxious. They gave me some dates, I can't remember how long they told me, but they said they were going to let me know. And I remember that I kept on phoning them back - “Are the results here?” you know. And they said, “Don't worry, we'll phone you when it's here, you know.” 

So eventually they phoned me to tell me about the results, and then they said they could tell me about the results, and they can actually tell me whether it's a girl or a boy. You know, they can do everything at the same time basically. So I said, “Yeah, they can as well, do everything, so let me get myself prepared.” So I remember when they called - I think they said they'd call me. I wasn't there, so I called them back and they told me over the phone that she's got sickle cell anaemia, you know. And I was like shocked - like, “Ah, oh no! SS [sickle cell anaemia].” You know, I was very, very - I was very, very, like - I don't know the feeling, you know? The next time I called them back, and I said, “Are you sure, [laughs] that she's got SS?” 

She said, “Yeah, yeah”, you know, “and you've got a little girl.” And it was very, very hard. And they asked me what I wanted to do. I said I'd call back, that, I think as I said before, I'd said maybe I think I might consider termination. But then, you know, after I just couldn't. When they told me that, I was like, “Oh, what should I do now?” And I just thought - because when they were going to do the CVS I actually saw a scan of the child moving and everything else. And in a way I just said, “Oh, this is lovely, you know, and even if she has SS, how can I, you know? How can I do this?”

 

From her experiences in hospital she was worried what life would be like for a child with sickle...

From her experiences in hospital she was worried what life would be like for a child with sickle...

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In fact I even met someone who has sickle cell anaemia, whose child had, whose small child has got SS [sickle cell anaemia], you know, like four, three, four years, who had a stroke, you know… I thought, “Oh well, I wouldn't want my child to go through this, you know, with SS, all this,” because I saw the features of the very severe form, you know… 

I mean, with SC [haemoglobin SC disorder] - I know it's a mild form… most of what I have is pain but I don't have so much chest infection, you know… I maybe have a chest infection but it might just be a cold. But I didn't have - because people have crises in their chest. I've heard of people doing that, when I was in the hospital. So when I was in the hospital I've seen people with SS. They come in quite often, more than SC. And you see they might be there, they might be there longer than you. They are there, in and out, maybe once or twice a month or something like that. They were in and out, you know. So I just thought, “Oh no”, you know, that I wouldn't want that. 

Footnote' Haemoglobin SC disorder is a type of sickle cell disorder in which the child has inherited hameoglobin S (sickle cell) from one parent and haemoglobin C from the other. Whilst it is a type of sickle cell disorder, it is a distinct condition. The symptoms can be similar to sickle cell anaemia, but SC disorder is often (but not always) milder in its effects than sickle cell anaemia. 

 

She couldn't decide what to do at first. Her husband said he'd support her whatever her decision....

She couldn't decide what to do at first. Her husband said he'd support her whatever her decision....

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Well, my husband is always very supportive. And he always leaves - most of the time he makes me, he lets me make the decisions, basically, you know. Because initially I was, we had to have a very big conversation. He kept on saying, “It's okay to keep the baby if that's what you want.” Of course I kept on thinking, “I think I'll have a termination.” “No, I don't think I'll have one,” you know. “I think I'll have one.” And he kept on saying, “No, well-”. I mean, to him it was, he was like in between as well.

He said, “Well, if from what you've read and everything and what you know, if you want to have a termination I will be there for you. But if you don't want to, we'll both be there, we'll both be for the child anyway. And as we have two already, they both have SC disorder, you know, so I'll be there for the child.”

 

She would have liked someone to tell her that although many people with sickle cell anaemia have...

She would have liked someone to tell her that although many people with sickle cell anaemia have...

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I was well informed, but I always just have this in my head, that all the people with sickle cell anaemia that I met at that time, you know, it's, “This is how they look like”, you know… Even if you look at the literature most of them, when they talk about sickle cell, they never talk about the fact that, “Oh, there's been some people that have lived a normal life”, you know. They will just talk about, “Oh, these are the things that can happen, you know - like pain, infection, stroke, kidney - all those things, all the things that might possibly happen are the things you read, basically, you know. So I… just had it in my head that, “Oh, SS [sickle cell anaemia] is like this”, you know. So when I was even pregnant I just had this thing that, “Oh well, knowing that, I don't know how I'm going to cope.

I mean, although they gave me a choice, in a way I would have preferred that I was able to mention to people that, “Oh well, not everybody turns out this way”, you know, and to be a more positive side, to be honest. Because in a way my mind was presented with more of a negative side, basically, and that's what I had in my head, and that's the presentation they gave me. And my idea is that, “Okay, the child has SS. Maybe this is what I will do”, you know. And I didn't get so much positive thing about something good might happen out of it, basically.

Footnote' the symptoms and complications associated with sickle cell disorders vary from person to person, and it is impossible to predict how each individual will be affected.

 

When she has a crisis, it's the worst kind of pain she has ever had. Keeping warm helps her avoid...

When she has a crisis, it's the worst kind of pain she has ever had. Keeping warm helps her avoid...

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I mean some people have other symptoms, but mine's mainly pain, pain either in my arms or my leg. They usually last for about a week. And that pain is so severe - you just can't describe that type of pain. I mean, sometimes I will say it's the most painful, more painful than giving birth, you know. So I'll go to the hospital, they will give me really powerful painkillers like diamorphine - that shows how really painful it is. When I was younger I wasn't getting all this pain relief. So when they give me diamorphine or pethidine - initially they were giving pethidine - it helped the pain. It will help you to relieve, just taking the edge off the pain, but the pain is still there. It will be there for about a week, you know, I'll be in hospital for about a week, and then I'll be discharged. So eventually I realised that with the cold weather it actually triggers off the pain more than anything, so I realised I need to keep myself warm. I started reading more about it. I need to keep myself warm, I need to drink a lot of fluid and everything else, you know.

 

Professional learning: It is important that people understand fully the risks they face, but it...

Professional learning: It is important that people understand fully the risks they face, but it...

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Yeah, for healthcare professionals, yeah it's good for them to let people know about the risks. Because I mean someone might say, “Why didn't you tell me that?” I mean, in this day and age if you don't tell people all the things, you know, they might sue you that you didn't tell them this and that, you know. So it's good to present things to people, but still let them know that there is always a hope, you know?

 

Professional learning: She takes an optimistic approach to risk, and just hopes things won't...

Professional learning: She takes an optimistic approach to risk, and just hopes things won't...

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There's always risks out there. And I always look at the fact that I just I like to be optimistic. I always say, if you cross a road you can be knocked down by a car, so why shouldn't you cross the road? Just cross the road, you know. That's the way I look at things, so I always think that I should deal with things as they come, basically, rather than be afraid that, “Oh no, this will happen or that will happen”, you know. 

So I think I'm still more optimistic about thing like that… Even when I had my daughter… although she's got sickle cell anaemia, I was just still hoping in my mind, deep down, that I hope that she doesn't turn out to be, you know. So I still had that in my mind. So I had this sort of picture that was going through my mind, but I was still hoping that, “Ah, well, hopefully, you know, all this will not apply to her, basically, but I will just try my best.” My idea was that I will just keeping on trying my best, whatever thing I could do, to avoid all these things happening. I will try my best with it, you know, and read more, get more information about it.

 

Professional learning: She would have liked more positive examples of how people live with sickle...

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Professional learning: She would have liked more positive examples of how people live with sickle...

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I was well informed, but I always just have this in my head [laughs] that SS [sickle cell anaemia], all the SS I'd met at that time, you know, it's, “This is how they look like”, you know… Even if you look at the literature most of them, when they talk about sickle cell, they never talk about the fact that, “Oh, there's been some people that have lived a normal life”, you know. They will just talk about, “Oh, these are the things that can happen, you know - like pain, infection, stroke, kidney - all those things, all the things that might possibly happen are the things you read, basically, you know. So I… just had it in my head that, “Oh, SS is like this”, you know. So when I was even pregnant I just had this thing that, “Oh well, knowing that, I don't know how I'm going to cope.

I mean, although they gave me a choice, in a way I would have preferred that I was able to mention to people that, “Oh well, not everybody turns out this way”, you know, and to be a more positive side, to be honest. Because in a way my mind was presented with more of a negative side, basically, and that's what I had in my head, and that's the presentation they gave me. And my idea is that, “Okay, the child has SS. Maybe this is what I will do”, you know. And I didn't get so much positive thing about something good might happen out of it, basically.

Footnote' the symptoms and complications associated with sickle cell disorders vary from person to person, and it is impossible to predict how each individual will be affected.

 

Professional learning: Her worries about having a baby who could be in a lot of pain made her...

Professional learning: Her worries about having a baby who could be in a lot of pain made her...

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I'm interested that, you know, some people would say “I'm a Christian, I wouldn't even think about termination.”

Yeah.

That wasn't your attitude?

No, it wasn't my attitude. It wasn't my attitude, no… I mean, to me it's that, you know, I didn't want to bring a child to the world that would really suffer, so that's the way I was thinking in my head, you know. And in fact at that time when I was pregnant with my older children, now I'm now a Christian, like I said, and now I'm more growing in Christianity. But at that time I didn't really sort of, I'd not really grown so much in Christianity at that time, so to me it didn't really matter. My idea was that I didn't want to bring someone that - because I'd been through so many pains, I know what it means to have pain. And my idea is that I don't want to bring someone to the world to have so much pain, you know.

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